I am just so tired all the time and contend with pain on a daily basis. I used to keep my house spotless, but now it looks like a pig sty. This alone is so embarrassing, yet I don't have the energy to do any of the things I once did. I feel caught in a vicious cycle of fatigue, pain, and depression, as the effects of the disease wear away at my self-esteem. I have gained over 100 pounds since I was diagnosed with SLE. In addition, I have family members who believe I've just become lazy. They've also accused me of being crazy and have threatened to lock me up because of my terrible mood swings. One moment I am fine, the next I'm screaming like a banshee. I feel so irritable and tense that everything seems to bother me. Some days are pretty good -- others I can barely get out of bed. There have even been times when I've had to use the motorized shopping carts at the store. This is extremely embarrassing to me.
My symptoms are extreme fatigue; migraines; memory loss; aches and pains everywhere; gastrointestinal problems such as: ulcerated esophagus, colitis, esophageal spasms, gastritis, heartburn, and mouth and tongue inflammation. I also suffer chronic depression, hair loss, weight gain, and allergies to several medications. The list of symptoms seems to increase every year. I haven't been satisfied with the health care I've received.
My nerves are shot and sometimes I feel that the lack of family support only makes my condition worse. I am not coping with lupus very well at all. When it gets really bad, I usually either go to my room and stay there or call my mother or sister. I just wish my family understood that I really am not crazy nor lazy! I truly wish I was able to do the things I used to.
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